Wednesday, July 27, 2005

It's a girl, but...

Hello to anyone still reading my blog. This will be my last entry.

I am at 19 weeks pregnant with a little girl -- my secret hope come true, though I told everyone I just wanted "healthy." I got my girl, but she is not healthy. My quad screen blood test showed a 1-in-14 chance of neural tube defect. Unfortunately that result did not come back before we were in the office for a Level 2 ultrasound on Tuesday, so we were blindsided by the news that our little girl has spina bifida.

Spina bifida is a serious birth defect. She has a lesion or hole in her spine because something went wrong in her development at around 8-10 weeks. In her case, the hole is very low on her spine, which is relatively good news. It means she may have difficulty learning to walk and to control her bladder and bowels, but probably will not be paralysed or unable to breathe, which could have happened if the lesion had been higher up. Unfortunately, she has the worst form of spina bifida, myelomeningocele, which means a part of her spinal column and its fluid are protruding in a sort of hernia or sac through the lesion. A common complication that she already has is hydrocephalus, or "water on the brain," with a related complication called the Chiari II malformation in which the pressure of this fluid presses her brain down into the upper spinal area.

All of her problems can be treated with surgery after birth, but things could get much worse for her in the remaining weeks of pregnancy if the fluid pressure in her head continues to build. She may not be of normal intelligence or if she is, she may have learning disabilities. She will always be a "special needs" child, and if she lives she will face a lifetime of surgeries and the risk of many complications. There is no "cure" for spina bifida, only treatments for its symptoms.

I am told that, insofar as they know, my daughter's condition has nothing whatsoever to do with her being a donor baby, unless my donor was untruthful about having a history of spina bifida in her family. I heartily doubt that; I know my donor is a wonderful woman. I am also told that since I took my prenatal vitamins, her condition has not resulted from something I did wrong, like a lack of folic acid. It simply happens in some cases, and nobody knows why.

I thank all of you for your support through the donor process, as I move on to this next challenge.

41 comments:

mutt said...

You, your husband and your little girls are in my thoughts and prayers...MTLBUAKU!!!

Millie said...

Oh, Bee. I was so very excited to see you'd posted again and just heartbroken at your news. I'm sending all the love and good thoughts I possibly can right now.

I'm just so very sorry.

There just aren't any words.

Lynnette said...

Delurking to tell you how sorry I am. I can't imagine what you're going through right now, but I will keep you and your family in my thoughts and prayers. {{hugs}}

nisha said...

Dear Bee
I was just thinking about you today and logged in to your blog and I am so very sorry to hear this. you sound very strong and level headed about it though and i am very proud of you for that. A lot of hugs and prayers coming your way! Nisha

Anonymous said...

Bee, many of us on the DE board have been worried because we had not seen you post. I am devastated by your post and my prayers go out to you and you family. I know the wonderful person that you are and you face all challenges with such bravery. Please let others help you in this difficult time and in the months to come. Hugs, Livvy

Anonymous said...

Dear Bee-
Not sure if you know me..I'm sickofendo. I read your blogg and check up on you as I was so excited to hear of your pregnancy. I don't know what to say to you except how sorry I am for what you are going through. The struggle to get pregnant was difficult enough and now this. You and your husband are in my prayers.
I can never make sense out of why things like this happen to good people. I can only pray that things get better and you find the strength to endure this struggle.

Susan in CA said...

Bee, there are no words. I'm heartsick for you and had so hoped you were just absent because of morning sickness. I pray you, your husband, and your daughter end up with the best possible outcome.

Susan

Anonymous said...

Bee, you are in my prayers as you deal with a new challenge. Sigh. I'm sorry for what you are dealing with now and pray for you and your family.

Much love to you,

Emily

HollyPa said...

Bee-

I am so sorry to learn of your news. I am heartbroken for you, your little girl and DH. I will be praying for you all. I can't imagine how you feel, but please know that many people from the board are thinking and praying for you. You are such a strong woman, and an inspiration to us all. I did want to let you know that my friend had B/G twins and one (the boy)was born with hydocephilis (sp?). He had a shunt put in when he was 3 months old and is doing just fine. I thought maybe this story would help in some samll way. Please know that you are in my thoughts.

Holly

thalia said...

Bee I just found your blog (via wessel) and wanted to say how sorry I am to see your news. I know you will get through it and I hope that nothing will get worse with your little girl's health.

Anonymous said...

Dear Bee,
I have often thought of you and wondered how you were doing. I am compltely heartbroken at your news. I can't even imagine how devastated you must be feeling. I will keep you and your family in my prayers.

Lots of love and big hugs to you,
ade

Anonymous said...

Bee,

My prayers and thoughts are with you, your DH and your little girl.

May you have strength in the days ahead.

lalamommy

wessel said...

Bee, I am just so shocked and upset by this news. I feel so terrible for you and wish I could be there to give you a hug. It is so unfair--there are just not words to describe what I feel toward the universe right now.

You said there was a 1 in 14 chance--what exactly does that mean? At first glance, that means to me that it is not for sure, and yet all the other information you provided makes it sound like it is a certain diagnosis. Are the doctors giving you any hope? What is the best case scenario?

Oh Bee, I have been wondering how you were doing and worrying about you and just missing you--I hope this won't be your last entry. Please keep us posted on how you are doing.

Anonymous said...

Bee,
I am so so sorry to hear your news. We just experienced a similar problem with one of our twins, and it was agonizing. She either had hydrocephalus or it was possibly a congenital problem where her brain had stopped growing. We were blindsided too.
Reading your post has brought back all my emotions.
Making a decision about how to proceed is one of the most difficult things that a mother can do.
Motherhood is not easy.
You are in my thoughts.
Suzee

Anonymous said...

Thinking of you during this tough time. It just doesn't seem fair .. after everything you have been through to get this far. I am praying and hoping that your little angel continues to fight hard. Know that you have many thoughts coming your way ...

With a big hug,
Your cycle buddy,
MeganW

Julianna said...

I am so very, very sorry.

chris said...

I'm so sorry. My thoughts and prayers are with you, your husband, and your daughter.

Andi said...

Bee, I am so sorry that you are facing this heartbreaking situation. I hold out hope for the very best possible outcome for you, your husband, and your daughter.

Anna H. said...

I'm so sorry, Bee.

My thoughts are with you and your family.

xxoo

Kimberly said...

Bee - I am so sorry for you news. But...please don't give up hope. Do the research and find the best person in the field to help you. Get a second opinion. They are now performing in utero surgery, that can help a great deal. I also know that a c-section, will help prevent further paralysis.

Here are two sites to help you get started.

http://www.michaelclancy.com/

http://www.fetal-surgery.com/fs-news.htm


My thoughts and prayers are with you. You fought for this pregnancy, now is the time to fight to get the best possible care for your little girl.

big, big hugs,

Kimberly

Suz said...

I'm here via Wessel and so, so sorry to here your news. I will keep you, your husband, and your daughter in my thoughts.

K|nneret said...

Here via Wessel, just wanted to say how sorry I am to hear your news. Best wishes to you at this difficult time.

Enough Already said...

Bee:

I am so sorry. I pray that you and your husband will have the strength to meet this new challenge.

DeadBug said...

I am so very sorry. Thinking of you in this difficult time.

--Bugs

Anonymous said...

I'm here from Wessel, and I'm very sorry to hear your news. Your family is in my thoughts.

Lily said...

You are a woman of incredible strength and compassion. The challenges you face are great, and my heart goes out to you in your journey . Your grace and goodness in navigating this extremely difficult and heartwrenching passage -- is already evident, and truly an inspiration. It's impossible to make sense of such painful things -- I believe Elie Weisel once said "We cannot control what happens to us in life -- we can only control how we react" Your reaction is one I will always remember -- as a guide and templet for how one must always strive to meet life's swift and sometimes devastating turns -- with love and goodness. I pray that you continue to find strength and hope... and that the goodness you so clearly possess (and inspire) -- will be returned to you in full. May there be comfort for you in the road ahead. You and your family are in my thoughts and my prayers.

deborah said...

Bee, you fought long and hard for your daughter. And now I pray for your daugher to show some of that same fighting spirit. I wish you and your family strength and peace.

Karen said...

Bee, I am so sorry. I agree with what many others have said here; you are handling this difficult news with much strength and grace. Your daughter is lucky to have you.

Anonymous said...

I'm so sorry to hear about this, Bee. I wish you and your family the best.

Lisa said...

Bee, how this can happen to you, to your husband, to your daughter, is beyond comprehension. The sheer unfairness is unfathomable. May you and your husband find strenth in each other. I am so sorry.

Lisa

Anonymous said...

Dear, dear Bee

I remember you from the high FSH bb.

I was checking up on Wessel and want to tell you how sorry I am that you are going through this. I too am hoping that you are one of the 13 and everything will turn out ok. I am left a bit confused by your post in that first you mentioned a one in 14 chance, then you speak in definite terms. But I will pray for you all and please have faith that things will turn out ok. Do you remember when Marcia was told that little wee Fina had a "bright spot" in her stomach on one of her tests, and then when she was born she was fine?

Well, I am thinking positive thoughts for you and your beautiful little girl and will say prayers for you from now on. You have a lot of support here, we all care about you and all pulling for you, and will do whatever we can to help you Bee.

Anonymous said...

Bee,
I am so sad to hear this news. This is just devastating. Please know that prayers are being said for you, dh and your daughter all over the world. Please let us know through the board if there is anything we can do.
Piper

Anonymous said...

Dearheart Bee,
Delurking to send hugs and share virtual tears - all I can do as a cyber buddy. Your news is shocking, literally felt like electricity going through my body as I read your post. I can only imagine the pain and anguish you must be enduring. No words of mine can soothe this hurt or ready you for the decisions you must face with your DH. I am so very sorry.

I also feel indebted to you for the wonderful resources you have put on your blog site. I am sure that many others have found it valuable. I only wish that there were something that I could do for you. All I can say is that there is undoubtedly a wonderful cyber community out there for parents facing a similar challenge with spina bifida. I hope they can be of help.

To the others who read the post and had questions, my interpretation is that the blood screen was the test that showed the 1 in 14 chance but that Bee did not receive the results in time to prepare her for the level 2 US that revealed the birth defect. The US was definitive in its diagnosis.

Much love,
Malka
an old buddy from high FSH over 40 bb

wessel said...

Malka, thanks for the explanation of the 1 in 14--of course. I was wondering how they could be looking at the u/s and then still giving odds. Duh.

Amy Linder said...

Hi -

I was just seaching the internet for blogs about spina bifida and I came upon yours. My heart goes out to you and your husband about your little girl.

My name is Amy, I am 31 years old and I have spina bifida. Myelomeningacele, to be exact. My spinal opening is very low on my back too. I have a shunt in my head to drain the spinal fluid to my abdomen, I have always worn braces on my legs to help me walk, I self catheterize myself and have a personal regime for bowel care. Other than this, I am a fully functioning, intelligent person who went to regular classes in regular schools. I went to one of the top colleges in the country, in fact. I have been happily married now for almost 6 years. I also have an adorable 2 1/2 year old, very active and very healthy daughter who is the love of my life.

Because your daughter's opening is also very low, and because medical technology is 30+ years better than it was for me, I wanted to express to you that I don't see why she won't have a great life ahead of her. I absolutely sympathize with you and send you all my prayers. But just know that it is very possible for her to have a happy, pretty normal life. She just needs loving, supportive and patient parents - and from the little I've read of your site, it definitely sounds like that's what she's got!

Please don't hesitate to contact me if you'd like to talk to me some more. My email address is SBMoms@gmail.com. I also have a blog of my own regarding my experiences as a mom with SB raising a healthy child. Please visit that at:
http://spinabifidamoms.blogspot.com. It may give you some reassurance, or at least to know that I'm out here in the world if you need someone with personal experiences to talk to.

Take care and best wishes.

A new friend,
Amy :)

Anonymous said...

Hi Bee-

I was tipped off to your site by a concerned friend who contacted the local spina bifida organization. I am a mother of a seven year old daughter with spina bifida. She has a low lesion and has shunted hydrocephalus. She is a beautiful, smart girl with enough spunk to take on anyone. Like Amy, she wears low braces to help her walk and self-caths. She had a surgery last year to help with bowel control. She has lots of friends at school and is doing well. Please e-mail me if you feel ready to talk with another mom. My e-mail address is diburns@mindspring.com

Try to let your grieving take it's course and be ready for your daughter when she arrives.
Warmly,
Diane

Anonymous said...

Hi Bee, I am from the Over 40 board as well. I wanted you to know that I send all the love and positive thoughts to you too. You, your dh and your dd are in my thoughts and prayers. I hope that you feel the hugs. Bridget

Anonymous said...

Hi Bee, I am from the Over 40 board as well. I wanted you to know that I send all the love and positive thoughts to you too. You, your dh and your dd are in my thoughts and prayers. I hope that you feel the hugs. Bridget

Teendoc said...

Bee,

The hospital I just left was the pioneer in performing in utero surgery to close/repair defects caused by spina bifida. I don't know if you are close to Philly, but Children's Hospital of Philadelphia has an excellent fetal surgery program.

My thoughts and prayers are with you.

Orodemniades said...

I'm so sorry.

T said...

Got here through Millie. I'm so very sorry. You and your family are in my thoughts.